Wednesday, November 16, 2016

Cicily was chosen to be Student of the Month for Mesa Public Schools this month! This is Cicily smiling at what her principal Mr. Oliver is saying about her at the recognition night. Mr. Oliver said they nominated Cicily because she is an inspiration in how she handles her challenges and works hard to learn.

Cicily with her great teacher from last year, Mrs. Martinez.

Cicily going through the victory tunnel!!! All the staff from Cicily's school that came to celebrate with her made this tunnel when she came out of the meeting. Cicily loves making a victory tunnel for her sister Sophie after her soccer games each week. It made me happy that Cicily got her own victory tunnel for a change.

Everyone from Zaharis elementary that came to support Cicily on her big night. Did I mention how AMAZING these people are?!?! They came to celebrate Cicily after working hard all day with her and other students. I've been to many schools as a student, teacher and mom and this is by far the very best school I have ever been to. Cicily is treated just like every other student (with a heavy helping of extra support) by the staff and the students. When I walk the halls with Cicily students of all ages say hi and are happy to see her. Other kids engage with her in playing and in conversation in class and at recess. It is truly inspiring. And Cicily absolutely LOVES it!

Cicily and her nurse Tamara. We have been very blessed to have Tamara be Cicily's 1/1 nurse for 8 years. They have a special connection.

Grandpa Courtney and Grandma DeEtte, Heath and Chelsea and family came to support Cicily! (Dad was out of state interviewing.)

Cicily was so excited about this honor. She wanted to wear a dress for the occassion but didn't want to wear any in her closet, so we had to go shopping for a new one! She really loves to learn and loves going to school. Her favorite subjects are science and reading. I love that she is getting straight As in her 4th grade classroom and learning so many age appropriate things.
Congratulations Cicily!! Keep on inspiring!

Thursday, November 10, 2016

Simple answers: We got the results of our genetics tests today. They found the gene responsible for Cicily's body. POLR1C (Maya has nicknamed it "polEric" for us). It's a gene involved in replicating proteins. It's a recessive gene that Chris and I both passed on to Cicily. POLR1C has caused 8 known people to have the brain issues Cicily has. POLR1C has caused 3 known people to have the facial features Cicily has. Cicily is the first known person to be affected in both ways. Chris and I have a 25% chance of having a child affected by POLR1C.

Good news is we have 8 people out there we can talk to about leukodystrophy and possible things they're doing to improve quality of life. We have a community!
Bad news is we can pass this on to future kids. We have wanted to have more kids. Chris and I have felt like we should hold off on that and today that door slammed shut.

New to Cicily's blog? Read some FAQs about Cicily:

Cicily at 8 years old

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.